"Life is not about the number of breaths we take,
but about the moments that take our breath away"

Friday, January 27, 2012

You don't LOOK sick...

Living with CF can be overwhelming, but try to remember- we are living! It can be a daunting task day in and day out with all the things that need to be done to treat CF, but I have found that having a written plan of action for all treatments, medication and exercise helps me fit it into my daily “normal” routine. Eventually it all becomes the norm for me and my routine becomes my lifeline...

The compliment I get most often is- “you don’t LOOK sick”. My response: “well thank you, I try”! And I try very hard too! Most of the time those of us with CF DON’T look sick. But like the old saying goes- it’s what’s on the inside that counts! I could be having one of the worst days in regards to breathing, feeling junky, and infection could be lurking just around the corner for me – but to those who see me moving through my daily routine, if you don’t work closely with me or live with me, they may never even suspect. It is not a ruse or a mask that we wear, we are not hiding anything, we are just trying to be “normal” in spite of what we are struggling with. You may not notice the extra precautions we take to stay out of other people’s breathing space when they show signs of a cold or the flu, or when we carry hand sanitizer in our back pockets in the winter. It may not look odd to you that I have a full sized shopping cart in the store even though I only have one item, because I need to lean on the cart so I can walk through the store that day. My coughing could be chalked up to allergies, asthma or swallowing my drink wrong...and at the end of the day when we are all getting ready for bed only my husband knows that I am hooking up to oxygen for the night because I feel like I need just a little help recovering from the day. All of these things are just little ways we continue to “not look sick” when we are out living our lives in public. But this is how we try to live as normal a life as possible! So please compliment me as much as you want – as long as that compliment is still “you don’t LOOK sick”!

As consistency is the key to success, I believe in a consistent routine in my healthcare regimen. I don’t mean that we have to do the same thing every day the same way everyday- that would be boring, but I do think that we need to incorporate the same effort behind what we know we need to do every day to have a successful day. A successful day can lead to a successful week and that can lead to a successful month! Many of my nebulizer treatments are the same each day, as are the pills, and even the therapies! But I like to change up my exercise routine and my food choices to make things fun! These are simple yet effective ways to keep the routine from getting too mundane. I also try to keep that written schedule I mentioned earlier, making sure that I am not skipping over anything or forgetting something important. Everyone’s days are busy enough, so I know that if I have it written down I am more accountable and the burden on me is less.

As the days get busier, and we are tempted to let a treatment slide here or there, I can speak from firsthand experience and say please don’t do this! Do what you can to make sure you fit it all in! With a routine it becomes much like brushing your teeth! It’s just something you do. Try making vest sessions fun with music or game shows or even with someone else to help with tasks you need to get done at the same time. I have been known to put on makeup while doing a nebulizer treatment to save time before work in the mornings! Make sure all your pills are out and ready ahead of time to take them- this minimizes forgetting any! I have four large pill boxes that are Sunday through Saturday so I can fill them for the entire month ahead. This also helps when it is time for refills on all my meds! Missing pills or treatments leads to missing more pills and treatments and this can cause major setbacks over time. It is a dangerous game to play, and one not easy to bounce back from. Take care of your lungs, and add up your calories- these are the tools we need to live balanced “normal” daily lives!

Incorporate exercise into your routine. This can stem from keeping a tally of how many times you climbed stairs in a day to taking a walk or riding a bike to a yoga class for deep breathing to a full blown work out or even a pickup game of your choice (I personally like volleyball or soccer!) No matter what the exercise is or the impact level, it is something which leads to more and more each day! As you continue you will notice a difference in your lungs, your attitude and your outlook on life!

Once in a while I still find myself hearing disappointing and sometimes depressing information from well-meaning but often misinformed people around me- that includes friends, family and yes even doctors. I try to remind myself of all the ways that this illness has transcended in the years I’ve been alive. From when I was born to now, I almost lose count of all the steps forward CF research has taken. Some of it I have been fortunate to benefit from and some of it not, however I still run into the negative mindset of the illness. I try to stay prepared and to put it into perspective, and when I am confused I seek trusted sources (my treatment center – whom I have had since day one, my mother – who has been step by step with me, whether moving forward or going backwards, and a few trusted online resources where others with CF can chat and voice meaningful conversation about everyday life with CF. i.e. www.cysticlife.com , www.cff.org etc.) I find it very helpful to connect with others who live with CF and their families. Although we travel these roads together, some of us can tell others what roads may lay ahead. Take advantage of this! It is helpful and it keeps us sane in the midst of our busy routines!

About Me

My name is Audrey. I am a college graduate, a full time employee, a member of many professional organizations, an active member of my church, a daughter, sister, and a wife. I also have Cystic Fibrosis. CF is an inherited chronic disease that affects the lungs (cloging them)and the digestive system (obstructing it). Ther is no cure, but I am living a very blessed life. My day seems to be a long one with treatments, pills, conscious nutrition and exercise. I hold a full time job and even have some fun! All in all I am pretty much the typical young working woman trying to make it in the world and trying to make a difference somewhere along the journey! I love life, especially mine! No really I have a pretty good life- I love my life and the people in it as the saying goes! If you are interested in my life and those in it feel free to browse through my posts... but I warn you I tend to ramble quite a bit!

Why Do I Blog?

I have gotten this question more frequently lately... so I thought I would answer it- where else, but my blog! I hope that the fact that I am getting this question means that more people are reading my blog, but who knows!
I believe I blog because I feel that so many people in this world are going through so many of the same things- only we don't know it. Blogging for me is a way to be in contact with people I know, people I dont know and people I have things in common with. My blog is of course a personal testimony of my life and all that my life entails. That could add up to a lot on some days and not so much on other days! I write about many things on here and I plan to get deeper into it- I write about church because I love the Lord and I feel very blessed. I write about family - my immediate family, my extended family and my CF family. I hope to connect with people in the world that may be sharing my experiences and I hope to compare notes! People interest me, they intrigue me and I want to know what makes them live life to thier fullest! I hope you enjoy my posts, I hope you feel free to leave comments, and I hope to make an impact and a change for the better of those I cross paths with!

I believe...

that the people you care about most in life are taken from you too soon.

that credentials on the wall do not make you a decent human being.

that even when you think you have no more to give, if a friend cries out to you - you will find the strength to help.

that your life can be changed in a matter of hours by people who don't even know you.

that two people can look at the exact same thing and see something totally different.

that just because two people argue, it doesn't mean they don't love each other and just because they don't argue, doesn't mean they do love each other.

that sometimes when I am upset, I have the right to be upset, but that doesn't give me the right to be cruel.

that we don't have to change friends if we understand that friends change.

that no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

that true friendship continues to grow, even over the longest distance. Same goes for true love.

that you can do something in an instant that will give you heartache for life.

that it's taking me a long time to become the person I want to be.

that you should always leave loved ones with loving words. It may be the last time you see them.

that you can keep going long after you think you can't.

that we are responsible for what we do, no matter how we feel.

that either you control your attitude or it controls you.

that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

that money is a lousy way of keeping score.

that my best friend and I can do anything or nothing and have the best time.

that sometimes the people you expect to kick you when you're down will be the ones to help you get back up.

that maturity has more to do with what types of experiences you've had, and what you've learned from them, and less to do with how many birthday's you've celebrated.

that it isn't enough to be forgiven by others, sometimes you have to learn to forgive yourself.

that no matter how bad your heart is broken the world doesn't stop for your grief.

that our background and circumstances may have influenced who we are, but we are responsible for who we become.

that you shouldn't be so eager to find out a secret. It could change your life forever.

that the happiest of people don't necessarily have the best of everything, they just make the most of everything.

Things I Love:

I love my immediate family: my husband Zach, my mom Glenda and the Lord above. I love being at the beach, watching the sun rise and watching it set. I love watching UNC basketball, beach volleyball and ballet. I love sunny weather, lazy afternoons, healthy days, and reading a good book! I love my cat Zoe, I love to write, look at pictures, and Coastal Living magazine! I love to laugh wholeheartedly; I love cheese and anything Italian. I love music, the piano, the violin and gospel choirs! I love babies, puppies, and a new pair of shoes!I love my church, love helping people and I love my jeep!I love spontaneity, a good surprise and surprising other people! I love Target, Bath and Body Works, and Pizza! I love to sing when no one is around, I love jersey knit sheets, finding things I thought I had lost, and traveling to exotic destinations! I love whispers on the wind, creative projects, and my husband’s family! I love Dave Matthew’s Band, going to the movies, and playing Rock Band! I love driving on the beach and having the back door open in the summertime. There are so many things I love, I love my life and all those in it. I love my journey and my adventures, all of them, the good and the bad.